Maybe a way to gently educate MS folks and their families about receiving and giving care and to not use the ‘burden’ concept (not just the word but the mindset- lots of people don’t use the word but have the mindset).
I often wonder if working with MS can be a poisoned chalice. Every step forward seems to take so much effort and factor in how long it takes to get studies approved and get consensus on study findings, get people educated on, and agree to use and follow new models can take over a decade it seems. In the meantime people with MS have to manage the best they can. MS can often not be visible, and I expect people would be shocked to find out if someone is living with MS.
I think the link with hormones is skirted over and it would be good to know if there is a connection and what the impact is. I am glad to read that Dr Dobson is working on this, I was wondering if the same problems women have also exist in men too? Reading about the " Manopause " was interesting.
Specific study into the interaction between MS and hormones.
At 52, diagnosed 21 years ago with benign MS and now faced with RRMS and the challenges of peri menopause… I am ILL, really very ILL.
Every monthly cycle I would experience mouth ulcer outbreaks and awful mood swings. Four years into peri-menopause I have been diagnosed with depression.
The influence of hormones on multiple sclerosis is under estimated and not well understood.
Yes, there are many groups working on hormones in MS and Dr Dobson in our group has a specialist interest in women's issues and MS. Outside of the management of MS and education I don't have time to research this.
MS prevention - vitamin D, obesity, smoking or EBV? Hand the baton to another team. It will take 30 years to work out whether prevention strategies are effective. Effective EBV vaccines / antivirals might be enough (but too many obstacles to get them up and running).
MS cure - promote the widespread adoption of IRTs (immune reconstitution therapies) early in MS? Are a minority really cured? Might just be moving the inevitable to the right. Leave it to others to champion IRTs.
Holistic management of MS, i.e. marginal gains? Feel good fluff. Doesn’t address the real MS. Spend your time on something useful.
MS self-management and revolutionising MS care? More feel good fluff. Doesn’t address the real MS. Spend your time on something useful.
MS education to inspire the next generation of researchers to take up the baton and run with it? In an ideal world MS researchers should be a dying breed ie sufficient progress should have been made so that little further research is needed. In 2019, Professor Alasdair Coles said that “I hope in 10 years’ time, a person will be given a handful of treatments to tackle all the different elements of MS, and they will be offered hope that their life will be minimally affected by the condition.” Surely we must be near to the beginning of the end. Leave it to other educators to train young researchers.
That leaves just one task / priority:
Smouldering MS - the processes driving worsening MS despite no evident inflammatory disease activity (NEIDA)?
If you really want to make a difference to the 130,000 people with MS in the U.K. (and world wide), stopping progression is the one to focus on. This is men v boys stuff (no sexism intended). Any idiot can set up a website and post the same stuff over and over again. The hero is the one who stops the shredder and allows MSers to be able to get on with their lives knowing that their level of disability has plateaued ie no further worsening. Ditching the five other priorities will give you time and focus. Succeed, and you’ll be the next Chris Whitty (now Sir Chris Whitty).
I strongly disagree with you. Ian. Marginal gains and holistic mgmt are key to managing MS. Far from fluff. The healthiest PWMS do it through marginal lifestyle gains. Here in the states, Dr. Way is and Dr. Stancic
In Australia, Dr. George Jelinek. In Canada, Matt Embry. All have MS and all are thriving through lifestyle medicine. No fluff. In fact, in the Western World, lifestyle medicine is the ultimate solution to the epidemic of chronic conditions. I think you need to educate yourself on this
Pat - happy for you to disagree. I’m pro healthy lifestyle - exercise, diet, sleep etc. But MS is a chronic progressive disease - the damage to the brain and spinal cord keeps going (quickly or slowly) - that’s why MSers become more and more disabled over time. I’ve skimmed the websites of some of the people you mention (they are good at publicising the books they write). Embry’s website mentions CCSVI which was debunked some time ago. What’s needed are drug treatments to counter the processes driving the damage, possibly including antivirals (EBV had been proven to be the cause / trigger for MS).
This. I eat healthy, did sports 4 times a week until the pandemic (sadly less since but intend to get back, even if it probably means full time work has to move) and despite ocrelizumab, I deteriorate.
And even for symptom management, lifestyle can't really compete with meds. I just spent 3 weeks in inpatient neuro rehab with a lot of sport. It does quite a bit for spasticity and fatigue but boy, the trials with anti spastic medication and fampyra are on a whole different level.
Hi Ian. Lifestyle helps slow down progression because they are anti-inflammatory. Bit I do see your pointvabout Dr. G research efforts. I believe many points like EBV, long Coved and microbiome fall under the smoldering rubric. And I totally agree about anti-virals against RBV. For myself, I am suffering from Long Coved affecting mobility.
But I strongly believe doctors like Dr. G need to publicize benefits of lifestyle. If I may ask, what is your daily MS protocol?
Ian I wanted to ask you about "(but too many obstacles to get them up and running)." I would be interested to find out what those are exactly? Personally I believe that if you want any change in life, you have to be part of the change.
I have watched a mother with MS go from being active to needing help to move about her own house in less than 10 years. It has stuck with me to this day.
Aug 15, 2022·edited Aug 15, 2022Liked by Gavin Giovannoni
I’m very much hoping you don’t stop MS selfie. I’ve only recently found it, but everything you say is very interesting to me. It’s a valuable resource, written at just the right level… more in-depth and scientific than the usual patient information, yet still v accessible.
As someone with recently diagnosed SPMS, the smouldering MS concept you describe makes perfect sense. I would like to see more emphasis here because I think this is my situation and because SPMS is so little understood with very few treatment options.
My other priority would be prevention via EBV. I have two children aged 15 and 11, so an EBV vaccine would be a fantastic option for them, and even better if it could halt existing disease too. Then we may have the chance to repair existing damage with remyelination treatments that are hopefully down the line, giving a bright future for those with and without the disease.
I agree that the right lifestyle and self management is very important, but other people/organisations etc are out there focussing on this, so this would not be a chosen priority for me/you. I follow the ‘Overcoming MS’ programme (overcomingms.org) and use the online MS gym (theMSgym.com) to help me manage diet, exercise, etc., and I find these are excellent.
Thank-you for all your hard work. I’m very grateful!
As someone who has had to watch my wife deteriorate since her diagnosis 18 months ago without being offered any treatment I maybe somewhat biased in thinking that options 2 and 3 would offer the biggest bang for your time.
Stopping MS in the first place would be the nirvana for the human race but that may take decades. In the meantime nipping it in the bud (or even possibly reversing symptoms) would change so many lives.
Just a legally enforced pathway or protocol for treatment would be a start. It seems to be a lottery at the moment. I have read about a female jockey and a female athlete who do not appear (I know, I don’t know their full situation but my wife can only potter along slowly with terrible balance) to have anywhere near the disability of my wife yet they talk about their drug treatments. You have talked about early intervention being important but for many not even regular MRIs are taking place to determine the type of MS or the number of lesions let alone treatment. Lastly you have talked about smouldering MS so this may also benefit from your focus being on these areas.
So agree Steve - there needs to be an agreed clinical pathway at all steps. It’s astonishing how different MS care and access to DMT/DMDs is - as you say a lottery - it is just not acceptable!
I do not have MS, so I have no personal vested interest in which disease-stage should have research priority. I do, however, have considerable experience of the organisation and method aspect of business and project management. So, I can comment objectively (with no disrespect to any other contributors):
a) As to which disease-stage should have priority in research generally (not necessarily your own time and energy, see below), the long-term view says the answer has to be 1 (Prevention), and by a country-mile.
b) As to where you would best focus your own time and energy. It seems clear from your comments that your personal resource is being stretched too thinly over too many areas. Obviously this has to be a matter for you to decide personally when it comes to it, but I feel your experience and time would be best invested in overall management of a team of younger researchers and clinicians doing the actual work under your direction, i.e. option 6. This could include succession planning for your eventual retirement, so that the good work (which will no doubt take longer than the time left before you will wish to retire) continues.
I hope you manage to obtain more support to continue your vital work, which I know is greatly appreciated by the many pwMS who look to you for guidance and championship as they try to come to terms with their illness and cope with the way it changes heir lives.
I'm also in this camp. This is how you do all of them! It's my impression that you have the following (both within the profession and wider community) to make this happen.
I don't see value in doing more work on "holistic management" of MS. People willing to put in the effort to exercise and eat well are already doing it. People who aren't won't have their behaviour changed by a few extra 30-minute NHS appointments.
What needs to change in that respect is the NHS being mandated to provide neuro fitness gym sessions. We have to travel 70 miles a week to a private gym which is tiring for my wife especially in the hot weather.
As everyone else, I echo their comments and I'm happy you got some time off. More widely- your emails give me alot of hope and are so educating.
Personally, 2 and 3- it's interesting I've spoken to my consultant about smouldering MS and he said that it was a contreversial subject, and it amazes me that it's not given more consideration because for me it's startlingly clear to me it exists- my symptoms are worse but I have no new lesions.....
Regardless, your ms selfie email is so important to me so I hope you manage to keep it up
Glad to here that you took a true break on your vacation. everything you offer up is important and interesting, but there’s no way you can do it all unless they can clone you. I found it very difficult to pick but selfishly, smoldering MS is what I’m interested in. Obviously, whatever you pick will be a great benefit for people with MS. Thank you!
I believe that the focus should be the ability to halt the disease from progressing. We are now able to reduce the flares but the progression keeps happening. It would also be helpful if doctors can recognize early symptoms so people can start dmds before too much damage is done.
I have paroxysmal pain symptoms with non specific lesions that are consistent with demyelination but no follow up. In limbo!
I am the mother of a child with MS. I have extensive contacts with IT experts (husband is a CTO). Many people are happy to volunteer their time to help you make your foundation a reality.
Email:
Maybe a way to gently educate MS folks and their families about receiving and giving care and to not use the ‘burden’ concept (not just the word but the mindset- lots of people don’t use the word but have the mindset).
I often wonder if working with MS can be a poisoned chalice. Every step forward seems to take so much effort and factor in how long it takes to get studies approved and get consensus on study findings, get people educated on, and agree to use and follow new models can take over a decade it seems. In the meantime people with MS have to manage the best they can. MS can often not be visible, and I expect people would be shocked to find out if someone is living with MS.
I think the link with hormones is skirted over and it would be good to know if there is a connection and what the impact is. I am glad to read that Dr Dobson is working on this, I was wondering if the same problems women have also exist in men too? Reading about the " Manopause " was interesting.
Email comment:
3&5
And
Specific study into the interaction between MS and hormones.
At 52, diagnosed 21 years ago with benign MS and now faced with RRMS and the challenges of peri menopause… I am ILL, really very ILL.
Every monthly cycle I would experience mouth ulcer outbreaks and awful mood swings. Four years into peri-menopause I have been diagnosed with depression.
The influence of hormones on multiple sclerosis is under estimated and not well understood.
Yes, there are many groups working on hormones in MS and Dr Dobson in our group has a specialist interest in women's issues and MS. Outside of the management of MS and education I don't have time to research this.
MS prevention - vitamin D, obesity, smoking or EBV? Hand the baton to another team. It will take 30 years to work out whether prevention strategies are effective. Effective EBV vaccines / antivirals might be enough (but too many obstacles to get them up and running).
MS cure - promote the widespread adoption of IRTs (immune reconstitution therapies) early in MS? Are a minority really cured? Might just be moving the inevitable to the right. Leave it to others to champion IRTs.
Holistic management of MS, i.e. marginal gains? Feel good fluff. Doesn’t address the real MS. Spend your time on something useful.
MS self-management and revolutionising MS care? More feel good fluff. Doesn’t address the real MS. Spend your time on something useful.
MS education to inspire the next generation of researchers to take up the baton and run with it? In an ideal world MS researchers should be a dying breed ie sufficient progress should have been made so that little further research is needed. In 2019, Professor Alasdair Coles said that “I hope in 10 years’ time, a person will be given a handful of treatments to tackle all the different elements of MS, and they will be offered hope that their life will be minimally affected by the condition.” Surely we must be near to the beginning of the end. Leave it to other educators to train young researchers.
That leaves just one task / priority:
Smouldering MS - the processes driving worsening MS despite no evident inflammatory disease activity (NEIDA)?
If you really want to make a difference to the 130,000 people with MS in the U.K. (and world wide), stopping progression is the one to focus on. This is men v boys stuff (no sexism intended). Any idiot can set up a website and post the same stuff over and over again. The hero is the one who stops the shredder and allows MSers to be able to get on with their lives knowing that their level of disability has plateaued ie no further worsening. Ditching the five other priorities will give you time and focus. Succeed, and you’ll be the next Chris Whitty (now Sir Chris Whitty).
I strongly disagree with you. Ian. Marginal gains and holistic mgmt are key to managing MS. Far from fluff. The healthiest PWMS do it through marginal lifestyle gains. Here in the states, Dr. Way is and Dr. Stancic
In Australia, Dr. George Jelinek. In Canada, Matt Embry. All have MS and all are thriving through lifestyle medicine. No fluff. In fact, in the Western World, lifestyle medicine is the ultimate solution to the epidemic of chronic conditions. I think you need to educate yourself on this
Pat - happy for you to disagree. I’m pro healthy lifestyle - exercise, diet, sleep etc. But MS is a chronic progressive disease - the damage to the brain and spinal cord keeps going (quickly or slowly) - that’s why MSers become more and more disabled over time. I’ve skimmed the websites of some of the people you mention (they are good at publicising the books they write). Embry’s website mentions CCSVI which was debunked some time ago. What’s needed are drug treatments to counter the processes driving the damage, possibly including antivirals (EBV had been proven to be the cause / trigger for MS).
This. I eat healthy, did sports 4 times a week until the pandemic (sadly less since but intend to get back, even if it probably means full time work has to move) and despite ocrelizumab, I deteriorate.
And even for symptom management, lifestyle can't really compete with meds. I just spent 3 weeks in inpatient neuro rehab with a lot of sport. It does quite a bit for spasticity and fatigue but boy, the trials with anti spastic medication and fampyra are on a whole different level.
The frustrating thing is that MS its a snowflake spectrum condition. I wish you well
I was thinking that the majority of conditions are snowflake conditions as you say. Because we are all unique at the end of the day.
I hear you with the efffects of medication. I often ask Dr's to change my medication if it is not helping with what I was given it for.
Hi Ian. Lifestyle helps slow down progression because they are anti-inflammatory. Bit I do see your pointvabout Dr. G research efforts. I believe many points like EBV, long Coved and microbiome fall under the smoldering rubric. And I totally agree about anti-virals against RBV. For myself, I am suffering from Long Coved affecting mobility.
But I strongly believe doctors like Dr. G need to publicize benefits of lifestyle. If I may ask, what is your daily MS protocol?
Ian I wanted to ask you about "(but too many obstacles to get them up and running)." I would be interested to find out what those are exactly? Personally I believe that if you want any change in life, you have to be part of the change.
I have watched a mother with MS go from being active to needing help to move about her own house in less than 10 years. It has stuck with me to this day.
Very much agree. This is more or less a longer version of my thoughts I just posted.
I’m very much hoping you don’t stop MS selfie. I’ve only recently found it, but everything you say is very interesting to me. It’s a valuable resource, written at just the right level… more in-depth and scientific than the usual patient information, yet still v accessible.
As someone with recently diagnosed SPMS, the smouldering MS concept you describe makes perfect sense. I would like to see more emphasis here because I think this is my situation and because SPMS is so little understood with very few treatment options.
My other priority would be prevention via EBV. I have two children aged 15 and 11, so an EBV vaccine would be a fantastic option for them, and even better if it could halt existing disease too. Then we may have the chance to repair existing damage with remyelination treatments that are hopefully down the line, giving a bright future for those with and without the disease.
I agree that the right lifestyle and self management is very important, but other people/organisations etc are out there focussing on this, so this would not be a chosen priority for me/you. I follow the ‘Overcoming MS’ programme (overcomingms.org) and use the online MS gym (theMSgym.com) to help me manage diet, exercise, etc., and I find these are excellent.
Thank-you for all your hard work. I’m very grateful!
As someone who has had to watch my wife deteriorate since her diagnosis 18 months ago without being offered any treatment I maybe somewhat biased in thinking that options 2 and 3 would offer the biggest bang for your time.
Stopping MS in the first place would be the nirvana for the human race but that may take decades. In the meantime nipping it in the bud (or even possibly reversing symptoms) would change so many lives.
Just a legally enforced pathway or protocol for treatment would be a start. It seems to be a lottery at the moment. I have read about a female jockey and a female athlete who do not appear (I know, I don’t know their full situation but my wife can only potter along slowly with terrible balance) to have anywhere near the disability of my wife yet they talk about their drug treatments. You have talked about early intervention being important but for many not even regular MRIs are taking place to determine the type of MS or the number of lesions let alone treatment. Lastly you have talked about smouldering MS so this may also benefit from your focus being on these areas.
Thank you for all you are doing.
So agree Steve - there needs to be an agreed clinical pathway at all steps. It’s astonishing how different MS care and access to DMT/DMDs is - as you say a lottery - it is just not acceptable!
I do not have MS, so I have no personal vested interest in which disease-stage should have research priority. I do, however, have considerable experience of the organisation and method aspect of business and project management. So, I can comment objectively (with no disrespect to any other contributors):
a) As to which disease-stage should have priority in research generally (not necessarily your own time and energy, see below), the long-term view says the answer has to be 1 (Prevention), and by a country-mile.
b) As to where you would best focus your own time and energy. It seems clear from your comments that your personal resource is being stretched too thinly over too many areas. Obviously this has to be a matter for you to decide personally when it comes to it, but I feel your experience and time would be best invested in overall management of a team of younger researchers and clinicians doing the actual work under your direction, i.e. option 6. This could include succession planning for your eventual retirement, so that the good work (which will no doubt take longer than the time left before you will wish to retire) continues.
I hope you manage to obtain more support to continue your vital work, which I know is greatly appreciated by the many pwMS who look to you for guidance and championship as they try to come to terms with their illness and cope with the way it changes heir lives.
With great admiration and appreciation.
+1!
I'm also in this camp. This is how you do all of them! It's my impression that you have the following (both within the profession and wider community) to make this happen.
I would go for smouldering MS. Need to find a way to prevent progression. I am on Kesimpta so no relapses but progression continues.
Try mavenclad.
I don't see value in doing more work on "holistic management" of MS. People willing to put in the effort to exercise and eat well are already doing it. People who aren't won't have their behaviour changed by a few extra 30-minute NHS appointments.
What needs to change in that respect is the NHS being mandated to provide neuro fitness gym sessions. We have to travel 70 miles a week to a private gym which is tiring for my wife especially in the hot weather.
My selfish desire would be # 3, smoldering MS. This seems to describe my case but we don’t hear much about it in the US.
I’m in the U.S. as well and didn’t learn about smoldering until MS Selfie.
Smouldering MS is my concern. So selfishly that where I’d like to see research focused
3
again, I say 3
LOUDER, 3 !
As everyone else, I echo their comments and I'm happy you got some time off. More widely- your emails give me alot of hope and are so educating.
Personally, 2 and 3- it's interesting I've spoken to my consultant about smouldering MS and he said that it was a contreversial subject, and it amazes me that it's not given more consideration because for me it's startlingly clear to me it exists- my symptoms are worse but I have no new lesions.....
Regardless, your ms selfie email is so important to me so I hope you manage to keep it up
Glad to here that you took a true break on your vacation. everything you offer up is important and interesting, but there’s no way you can do it all unless they can clone you. I found it very difficult to pick but selfishly, smoldering MS is what I’m interested in. Obviously, whatever you pick will be a great benefit for people with MS. Thank you!
What about remyelination therapies?
I believe that the focus should be the ability to halt the disease from progressing. We are now able to reduce the flares but the progression keeps happening. It would also be helpful if doctors can recognize early symptoms so people can start dmds before too much damage is done.
I have paroxysmal pain symptoms with non specific lesions that are consistent with demyelination but no follow up. In limbo!
Any suggestions?
How can we all help you set up the Foundation?
I am the mother of a child with MS. I have extensive contacts with IT experts (husband is a CTO). Many people are happy to volunteer their time to help you make your foundation a reality.
Feel free to ask if we can be of assistance.